For nearly a decade, the federal government has been trying to find ways to make medical records more accessible for Medicare and Medicaid clients. The initiative is known as Blue Button. Earlier this year, that initiative introduced a new version of Blue Button—Blue Button 2.0. It's now easier for Medicare patients to access their health care data and also to share it.
To get a better idea of what this transparency could mean for health care consumers, we spoke with Allison Oelschlaeger, Chief Data Officer at the Center for Medicare and Medicaid Services with the federal government, and Meg Dryer, the Vice President of Consumer Experience at Cambia.
"One of the goals of Blue Button is fostering competition among technology innovators to serve Medicare beneficiaries and their care givers."
Allison Oelschlaeger (AO): Blue Button 2.0 is a developer-friendly, standards-based application programming interface (or API) that allows Medicare beneficiaries to share their claims data with applications and services that they trust. We launched Blue Button 2.0 in March of this year, but it was originally created in 2010 with the creation of Blue Button, which is a symbol that was developed across government agencies to indicate a place where you could go to get your claims information, your personal health record information.
But, what we realized as we looked at Blue Button and the use of Blue Button, it only offered beneficiaries a way to get their data in a PDF or text format. That's a big stack of paper with information about doctor’s visits and prescription drugs. And for Medicare beneficiaries, that could be massive amounts of information. Having it in that format made it difficult for them to use or share that information.
Rachel Peters (RP): Allison, you've also made this available to developers, is that right?
AO: Absolutely. One of the goals of Blue Button is fostering competition among technology innovators to serve Medicare beneficiaries and their care givers. We wanted to create this developer-friendly API to encourage the development of apps of services. A couple of the things that we've done to make it developer friendly includes things like creating a sandbox with fake Medicare claims information, to allow developers to test and build apps before they truly get to a point where they're offering them to beneficiaries. We also have a really active Google group, where we engage with developers, answer questions, and are starting to see developers interacting with one another to answer each other’s questions.
RP: Meg, I know you and your team have been one of those developers to take advantage of this API. Tell us a little bit about what Cambia is doing with Blue Button 2.0.
Meg Dryer (MD): Yeah, so we have loved the opportunity to play around in the developer sandbox and be able to take data. Our goal is really to make it as seamless as entering your mymedicare.gov username and password. Then, we show you all of your medical history in one place. We enable that, or we transform that, into a very easy to understand, filterable user experience. It really is just totally straightforward. You can filter by what doctors have I seen, what prescriptions do I have. That data empowers users to really question some things, or recall what they've been through, what diagnoses they have had, what immunizations they've gotten, what prescriptions they're on, etc.
Our goal is really to just be able to present to users a comprehensive set of data in an easy-to-use format. Then, we're kind of moving on from there, but we're really excited about the possibilities of Blue Button 2.0, and the ease with which CMS has made it possible to experiment with that data.
"With this resource, we're talking about beneficiaries that are enrolled in traditional Medicare or Medicare fee-per-service, which is about 40 million beneficiaries. For those 40 million beneficiaries, CMS is processing over a billion claims each year."
RP: Allison, I know you've also mentioned to me that you've seen some really interesting ways that developers are using this API, ways that you didn't even expect someone might use data like this. Do you want to talk a little bit about that and what you've seen?
AO: We've seen a variety of different applications come through in terms of both working within our sandbox, but also getting all the way to the point where they're offering applications to beneficiaries. Several of them are more in the personal health record app space, so things like helping manage medication, reminding beneficiaries about doctor’s visits, or a reminder to get your flu shot—that sort of thing.
But, we're also seeing apps for example in the research space, where beneficiaries are able to donate their data to allow in-depth research on a specific type of condition that they have, or more population health-based research. We're also seeing apps that allow beneficiaries to onboard or check in when they're at the doctor’s office, to say, "I'm participating in Blue Button, and I want to share my data with my doctor that I'm going to be seeing in a few minutes." So, that they know about past visits, they know about my vaccination history, they know what prescription drugs I'm on, so that I don't have to tell them all that when I'm in the office.
RP: This all sounds like so much data. I'd love to hear from you some way to quantify—how much health care data is the federal government responsible for? If that is even possible to quantify.
AO: It is possible to quantify. With this resource, we're talking about beneficiaries that are enrolled in traditional Medicare or Medicare fee-per-service, which is about 40 million beneficiaries. For those 40 million beneficiaries, CMS is processing over a billion claims each year.
MD: Yeah, that's the kind of data that data scientists dream about. I had a question for you, Allison, which was I know that you have done a lot to bring attention to this across the developer community. Can you tell us a little bit about some of the things that you've done, the conferences that you've run?
AO: Yeah, absolutely. We launched Blue Button 2.0 at HIMSS in March, which is a big health care IT conference. Then, over the past several months we've been trying to get out to a variety of conferences and events to talk more about Blue Button 2.0. But, in addition to doing outreach at events that other folks are having, we held our own, the inaugural Blue Button Developer Conference (BBDP as we called it) in August.
We brought a whole bunch of folks, developers who were already working with Blue Button in the sandbox, developers that had apps that were ready to go, and folks who were interested in this space together in D.C. for a day-long event, where we had the CMS administrator and senior White House officials speak, as well as demos of specific apps that were ready to present, to show what different kinds of uses of Blue Button.
We also talked about kind of where we see this going and the whole MyHealthEData initiative. It was a really fun event.
"What we have noticed is that there's this moment of delight in the reveal of all of your health data in one place."
RP: We've been talking a lot about what Blue Button 2.0 means for developers, and what a great job CMS has done at making that available. What about consumers? Do consumers…are they aware of this new technology? How's this impacting their day-to-day lives?
MD: I think what's been really interesting is, you know the end consumer at the end of the day doesn't really care about the technology and how it works. Their knowledge of how data is exchanged, and interoperability, and whatnot is very limited. What we have noticed is that there's this moment of delight in the reveal of all of your health data in one place.
As we've been testing our application with people, there's this moment where you all the sudden enter your medicare.gov username and password. And we've been mostly playing around in the sandbox, but the idea of like “That's all I have to do and then this entire record shows up? Which is everything I've been trying to assemble and everything that I wanted?” There's this sort of moment of like, sometimes an audible gasp from people, where it's actually unbelievable that someone has enabled that to happen.
I think that's the power of Blue Button 2.0, is that moment where it's like, "Oh my gosh, I didn't have to do any work for this, and everything that I wanted is here in front of me." That's just so powerful, and I think as those moments of aggregation happen, as those moments of assembly happen, we'll be able to see a lot more empowerment on behalf of the user. I think as Allison said, it's just early trying to figure out how people are using this. And I think people will get a lot more creative around it. Right now, what we're noticing is just the sheer delight of the assembly of your health data in one place.
RP: People are having these really strong reactions to having this all in one place. What do you think that comes from? What is their experience without this?
MD: Generally, if you're trying to get your health information, it is a long, arduous process. You have to go basically physician by physician, requesting your records. Sometimes there's a huge fee associated with those records. It's really a laborious, time consuming, often times expensive manual process, right? Very few people do it, because it just consumed such time and you hit all these barriers along the way. That magic of being able to say “All I need is like a username and a password and ta-da, poof, everything appears”—it's a completely different experience. It's a “180” from where that process is today.
"They are really expecting that their experience is a true consumer experience. They're comparing experience of health care not to other health care experiences, but to an online shopping experience, or to an entertainment experience."
AO: I think as new apps are developed, it will be interesting to see how consumers choose to use them. Also, I think what we're seeing in Medicare is this shift. With the new baby boomers joining the program, they just have a different expectation, a higher expectation in terms of digital services that are available to them. We wanted to get in early with Blue Button 2.0 to really offer them the type of experience that they expect, in terms of being able to access their information, having mobile tools, and the ability to interact online, that maybe our current Medicare population doesn't necessarily expect, but those joining do.
MD: Yeah, and we see that too, Allison. I think the terminology of the consumerism of health care, where the people who are entering Medicare now and generations younger than they are really expecting that their experience is a true consumer experience. They're comparing experience of health care not to other health care experiences, but to an online shopping experience, or to an entertainment experience, or something like that. The expectation of ease and efficiency is very much that standard. It’s set by experiences outside health care. It's important that we continue to drive toward that.
RP: There's a lot of strong interest from consumers in having this experience, but what are some of the barriers in actually making that happen? Either on the consumer side, or on the health care organization side.
MD: I think on the consumer side, health care is something that we want to be easy and efficient and we often don't want to pay a lot of attention to, unless we have to for reasons of having a chronic condition or we've got something going on in our life, or we have a loved one or whatnot. But, when you have free time, you're first thought isn't, "Oh, I'd like to really go investigate my health care app." Maybe there's some people out there who love that, but I think just that is one of the challenges. I think another challenge is a lot of things in health care are laden with confusion, and guilt, and all kinds of emotions right now that are beginning to change.
I think the paradigm of celebrating what you have achieved in terms of health, what you do have, and how you can empower yourself to make better decisions and lower costs, and things like that. But, a lot of times it feels very out of our control. The things that feel in our control are sometimes things that we have difficulty engaging in. Wellness, for example. There's a lot of guilt and shame about the fact that like I might be eating foods that I shouldn't eat, for example. I think there's also some underlying emotional reasons that engagement with health care is oftentimes challenging and difficult.
"Another key piece for CMS is, as I mentioned, unleashing data. We're taking a lot of steps to make more of our data available to researchers."
RP: To step just a little bit back, Allison you told us earlier about the MyHealthEData initiative, and how Blue Button really is supporting that larger initiative. Can you tell us a little bit about what that is? It sounds like it launched pretty recently, but what's the overarching goal and what parts of the government does that actually touch?
AO: Yeah, so MyHealthEData was launched at HIMSS in March. Really, the goal aligns closely with the goal of Blue Button, which is empowering patients with data and unleashing more data to drive the transition towards value in health care. It's coming out of the Office of American Innovation at the White House, and it's a joint effort across government. Multiple parts of HSS, including CMS, the Office of The National Coordinator, the National Institutes for Health, and then also entities outside of HSS, like the VA.
Blue Button is a key piece of MyHealthEData, but another key piece for CMS is, as I mentioned, unleashing data. We're taking a lot of steps to make more of our data available to researchers. We have our virtual research data center, where this year we announced that we're making data for beneficiaries that are enrolled in the Medicare Advantage Program available. Next year, we'll be releasing data for Medicaid patients through the T-MSIS, Transformed MSIS program. We're also doing a lot to make data available on our website to help promote research and analysis and the creation of tools that drive towards value.
RP: Allison, is there a hope that initiatives—which, that is incredible—will help to put pressure on, or drive more interoperability and data sharing and openness in the private sector?
AO: Absolutely. We think that giving patients access to their data is important across the health care system. CMS is leading by example with Blue Button, but we're also encouraging folks across the health care system, including other payers, to take up this initiative as well and make data available to patients.
"There will be pretty significant advancements in security and privacy and how we negotiate trust between entities that are creating applications and uses for people and this data, and the people who are actually owners of that sensitive information."
RP: That's so great. Well, we're talking about what's next. What should consumers be on the lookout for, what should some of our listeners hope to expect in the coming years?
AO: I think we're just at the beginning of this digital revolution in health care. I am just excited to see what comes next in terms of the types of applications and services and tools that are available to patients to help them manage their care. But at the same time, I think one area that has been very critical for CMS, and that we all need to think about as we move forward in this space, is privacy and security. Because this is sensitive information, and it is information that patients are concerned about and want to make sure is kept secure. With Blue Button, it's something that we've focused on from the beginning, in terms of making sure that we're being careful to create the security and privacy standards that are necessary to protect this information. I think it's something that we'll just have to continue to keep an eye on and keep a focus on as we move forward.
MD: Yeah, I totally agree Allison. I'm so glad you brought that up. I think the future is going to consist of a lot of development and openness, and hopefully everyone will sort of be able to see the value in providing patients with their own information. At the same time, it's sort of like as we go towards that openness and that interoperability and whatnot, there will be I think pretty significant advancements in security and privacy and how we negotiate trust between entities that are creating applications and uses for people and this data, and the people who are actually owners of that sensitive information.
RP: Thank you both so much for joining us here today, this has been a really great conversation. I'm really looking forward to hearing more about what's next with Blue Button 2.0.
MD: Well, thank you, it's been a delight, and Allison I learned so much so thanks very much.
AO: Yeah, thanks Meg and Rachel, this has been a great discussion.
Leslie Constans: That wraps up this episode of HealthChangers. You can find more information on all of our episodes at cambiahealth.com. You can also follow us on Twitter at @Cambia. Please subscribe to HealthChangers on iTunes or Stitcher and leave a review. Thanks for listening.